“Medically Unexplained Symptoms”

One of the biggest challenges faced by people who have chronic illnesses is that of being believed. Of being listened to by professionals, and finding people who understand that conditions like fibromyalgia, M.E. and so on are real, physical illnesses. After my encounter with the rheumatologist last week, I went back to a post that had been flagged up in the FibroME For Action Facebook community (link in the side bar) about the Barnet Clinical Commissioning Group’s pilot study in managing people with “Medically Unexplained Symptoms” (MUS). (more info here on the dx revision watch website)

This all sounds like a bunch of NHS jargon-speak, which it is, but essentially they were putting forward the idea that people with MUS (which they class as fibromyalgia, M.E, chronic pain, post-viral fatigue, CFS and “somatic anxiety/depression”) shouldn’t be referred on to secondary care (rheumatologists etc.) but should stay under the management of GPs . The purpose of this?

  • “Reduced GP secondary [rheumatology, physio, OT etc] and tertiary [inpatient programmes] referrals.”
  • “Reduced unnecessary hospital investigations and prescribing of medicines”
  • “Reduced GP appointments and out of hours appointments to A&E or GP”

So, a pilot that’s designed to reduce access to specialists and prescribed medicines for people with conditions like fibromyalgia, M.E. and other chronic pain disorders . Well this can’t possibly go wrong.

This is clearly a cost-reducing exercise. But the NHS can’t just say “sorry, you’re just too expensive to treat” and needs to give some kind of reasoning behind their actions. Let’s start by having a look at how they describe those of us with “MUS”:

“Other terms used to describe this patient group include:…Bodiliy Distress Syndrome (BDS)”

Remember where we’ve seen that term used before? Our friend Dr. Fink, who considers these conditions to be mental disorders. So that’s concerning, for a start.

fibrogoogle

Always fun searching on Google…

There’s another document here that goes into a bit more depth about exactly what people with MUS are like (other than “generally annoyed and in pain”, obviously). I want to highlight some choice quotes:

  • “MUS cannot be easily ascribed to recognised diseases. They might be caused by physiological disturbance, emotional problems or pathalogical conditions which have not yet been diagnosed.”
  • “More common in women”
  • “Past health and psycosocial experiences may encourage some patients to minimise certain symptoms and over emphasise others to shift the doctor’s attention in a particular direction.”
  • “Most people with MUS who see their GP will improve without any specific treatment”

This paints chronic illness patients as manipulative and hysterical.  GPs are being told that anyone with an “MUS” doesn’t need to be referred to a specialist, that our symptoms are “emotional problems” and that we’re likely to try and manipulate our doctors to get what we want. Anyone who has been to a cynical doctor knows that sometimes, focusing on one particular symptom is the only way to get them to listen to you so you can get the treatment you need.

Here’s another quote from the same document:

“For MUS, good practice consensus recognises that not investigating may be best for the patient.”

The document recommends that to investigate – to give “credibility” to our pain and fatigue – is not good practice. This attitude belittles us, patronizes us and says “doctor knows best”.

mus

From “Pilot of Enhanced GP Management of Patients with Medically Unexplained Symptoms”

Focus on managing symptoms rather than getting a diagnosis, don’t treat with drugs, saying that “a serious cause is unlikely”. This puts conditions like fibromyalgia, M.E., et al. under the “not so bad” group. And then we’re back to “just get some more exercise” as a cure.

This is dangerous. I believe this is an unsafe way to practice medicine. To tell medical professionals that when people come to their surgeries with medically unexplained symptoms, you don’t investigate to see what the problem is. This is why we are facing a massive lack of research into conditions like fibromyalgia and M.E. We are fighting a long battle to get the medical profession as a whole to treat these as conditions and diseases, rather than just a pile of “unexplained” symptoms. They’re being told it’s not worth their time, that it’s a waste of money and resources. That we are not worth the trouble. That, quite frankly, is appalling. Once again, it comes down to the tired, sick, exhausted and chronically ill to do their own research and fight the battle.

If you don’t look for a diagnosis but just manage the symptoms, people with chronic illnesses will go undiagnosed. They will not get the correct treatment. This is how we end up with people getting psychological treatment for a physical illness. Figures for the prevalence of illness will be inaccurate, and it will be very difficult to make the case for more research into these conditions.

I believe we need to be doing more research into these chronic conditions so we can find a cure for them.  The attitude at the moment that “managing” the symptoms is enough. Please do read the documents I’ve linked to, I’m really interested in hearing other people’s views on what they say. And then let’s work out how we can change this.

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9 Comments on ““Medically Unexplained Symptoms””

  1. Heather says:

    Is this post based on the States? I live in Canada, and my fibro was neither questioned by my doctors nor my specialists. We even have chronic pain clinics that specialize in the treatment of it. There is research going on in the world, however, for some reason the USA seems to be lagging on accepting that something can exist with out a specific test. Right now elimination tests are how it is diagnosed. But there is definitely enough research our there showing how the disease exists, we just don’t know how to test for it…

    • Emsy says:

      Hi – no I’m based in England. There is enough research but it seems to be very difficult to get people to look at it. These guidelines are designed to stop patients getting access to the treatment they need – it’s focused on managing the symptoms rather than actually treating the condition, and keeping people under the care of their GPs (who may no little to nothing about the conditions). It even says that getting a diagnosis might be a bad thing. It makes people with M.E./fibro etc. effectively invisible as they refuse to name what we have.

      • Getting a diagnosis can certainly be detrimental here too. It blanket denies you for all future disability or medical claims for prescriptions etc, because they can say it was for a “preexisting condition”. GP’s have no idea what to do, that’s for sure. The guidelines you are referring to need to be addressed and patient treatment centres need to be established. Not sure how to go about that though.. I just moved to a smaller metro area, and if I didn’t go through 6+ years of rehab before I got here I would have been screwed. I hope you guys get some advocacy to help out, but I’m not even sure where you would start. Our systems are so different. -Heather

  2. saraannon says:

    Over twenty years ago I received a psychiatric referral to the UMASS pain control center to prove to me that my complaints were all in my head. Once I was examined the doctors said that I had the worst case of myo-fascial pain syndrome they had ever seen, and that I was completely disabled for life with no hope of improvement ever. They also apologized to me for the insults of the medical community and asked me if I would allow their students to examine me to learn what should NOT be dismissed as hysteria. Even so they missed the gross evidence of multiple bone chips scraping around inside my head and the scarring and blockage in my liver. I eventually found help in alternative approaches, but am always horrified that doctors cover up their own inadequacy by accusing the patient of being a head case.

    • Emsy says:

      Oh my goodness that’s awful! I’m so sorry you had to go through all that.
      The way in which people with genuine disabling conditions can just be dismissed is so terrible.

  3. I`m not sure where in Canada Heather is, but I can tell you that my experience with medical professionals is much different. I have had a hell of a time finding a doctor who 1. Is familiar with chronic pain or 2. who will treat a person with chronic pain. I may also be that most doctors in my area (Durham Region of Toronto), do not believe in Fibromyalgia.

    My doctor buggered off and moved to Alberta when she got fed up with Ontario`s health care BS. I don`t blame her, but she sure left me stranded and then some. I cannot get disability without going through the entire diagnosis process *again*. IF I can find a doctor who will even accept a chronic pain patient. Mention that you have chronic pain and the walls go up, “Sorry, not accepting new patients.”

    So while Canadians do enjoy “free” health care, it does not mean that our health care is perfect or even good. Not all doctors are trained with chronic pain patient care, or will even accept them.

    Yes, we do have pain clinics (free with referral), but they are not ideal either. The pain specialist I was referred to before would not prescribe pain medication because he didn’t believe Fibro patients needed it. My doctor was outraged. She said that was like saying a diabetic didn’t need insulin.

    The fact is that many so-called pain specialists here (including my rheumy) prefer to “prescribe” cortisone injections. Why? Because they can charge patients an additional $60 per shot session – it is not usually covered by provincial health care. So patients must pay out of pocket. The pain specialist gets his fee for the visit plus the fee for the injection. Why would they prescribe pain medication when they get paid so much more if they prescribe cortisone shots?

    Disgusting. Freaking negligence. But what can you do about it? Not a damn thing.

    Shannon from http://www.livingwithfibromyalgia.ca

    • Yeah Shannon, I’m not sure what to do there but move, which isn’t realistic. I received my treatments in Calgary and it did take about 4 years to go through the whole process from testing to diagnosis to being accepted into the pain management clinic- so it is still a fight the whole way. You really have to live in a major metro area where the funding and research is, like toronto, vancouver, calgary… smaller cities, like the one I live now just don’t have the funding. I can’t even get a GP to look at me, I’m a “multi-case” and no doc wants those, too much work. Thankfully, I can go into a walk-in now and order what I need and so far no problems. I don’t need opioids or anything so I get what I ask for. I hope you don’t give up and keep looking for a doc that listens to your needs and learns what works. Good luck 🙂

      • I’m in the Greater Toronto area. Can’t afford to travel back/forth into the city for treatment or doc visits so I’m stuck with whatever I can get locally. Suburbia.

        I too go to a walk-in clinic, but their no opioid prescription policy is hit and miss. I had been going there for well over a year with no issue on having my opioid refilled. I got a Dr recently who refused to refill the prescription (same dose) I had for Nucynta – that I`d had since 2011. Just because he felt like it. Didn’t want to refill it. Didn’t have to, according to him. Um, hello? Same dose, and one I hadn’t even been filling every month because I have to *walk* to the clinic. It is already a real hardship for me to even go to the clinic. But no, this Dr figured I must be some lay-about 2nd class citizen looking for a handout.

        It’s SO frustrating when a *doctor* is the one placing prejudice on you and your illness. I flat out told the asshole that I’d make damn sure he wasn’t working the next time I came in. Because of his less than stellar so-called bedside manner. I was so livid. I’d walked there in 20 below weather for crying out loud, just having begun to recover from a nasty flu no less. The guy was a wall of non-sympathy to boot. I’m steaming mad just recalling the experience. Like the guy felt he was doing some kind of good deed just for lowering himself by tending to the unfortunate peons who have to go to the walk-in clinic for treatment.

        The thing is, I already went through the several year process of finding what medications work. But now that my doctor moved to another Province, no one is taking her word. Even when I have documentation proving my diagnosis and a long history of prescription doses. Yeah, that’s how effed up things are.

        Yes, I’m still looking for a REAL doctor who actually gives a damn about his/her patients and treats them like human beings that matter. Is there such a creature?

  4. […] Let’s deal with the first point first. Fibromyalgia is classed by the World Health Organisation as being a “soft tissue disorder”. I’m aware that there is extensive debate happening about the accuracy of this but the fact remains it is recognised as a condition. Changing the name of the condition de-legitimises the patient. It says, “if we give you a medical name you’ll think you actually have a problem. So we’ll … […]


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